I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Created with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA.

Comments (742)

I have lived with a brain injury for 8 years now and the problems with others not understanding is one of my biggest obstacles and unfortunately it’s no ones fault but we need to do more to educate people so when they meet someone who has difficulties in everyday life they no how to respond!!! I was fourtunate enough to have one of the best teams of doctors around me but it took me years to understand that in order to be a survivor I must thrive and accept what has happened and learn to live with what is now a new normal I still forget and get overwhelmed and anxious and yes crowds are still challenging but I wake up and smile everyday because I AM A SURVIVOR doctors said I would never be able to have kids and I have a beautiful 8mt baby boy and live everyday to the fullest even with my crazy brain!!!!

Kudos to you for Celebrating Life after Head Injury! First, we had to educate ourselves. Had YOU ever heard of TBI? Me neither. Begin by teaching your family that you need more time to Process their Questions, let them know what to expect regarding more Time, dealing with Aphasia (they never heard of that either!) & the many "tricks" you use several times each day re: Short-Term Memory. Now, we can BEGIN to educate the Public & those we come in contact with most. P.S. Congratulations on your baby boy!

This article is truly amazing. My wife suffered severe TBI when she was 17 years old as a result of a hit and run. I have been very impatient and expecting more of her. One thing I do know is that she is actually very intelligent, perhaps higher than average but I have been critical of her many times. This article has absolutely answered every question I have ever asked. I can see that I have done EVERYTHING wrong!! Thank you, thank you, thank you a million times!!! She is actually interested in training to be a rehab practitioner to help others and I was searching to see what training she can do.

Unbelievable. I am reading my experience express much better than I could. Thank you for posting this. I'll send it to my family (who have been wonderfully patient with me so far, and will appreciate this explanation.).

10 day coma, chemically induced. Woke up without the use of left arm. Skull was put back after brain swelling was down in 30 days. Learned to walk, use my arm again. Minor short term memory loss and partial numbness in left pinky and ring finger but still came back to be a chef of a successful restaurant. No stress, anger, dis-organization or behavioural problems at all. If you believe you can recover, the brain believes it and will heal itself if you have a strong enough will. It takes time and practice but it’s possible.

My niece is recovering in mercy hospital right now..4 weeks since her accident.She was in induced coma same as you.3 MRI's say no damage but it's been 4 weeks she still dazed but doing therapy..Your comment made me feel better..thanks

Thank you so much for that. I have suffered a secondary TBI and there has been the stigma that hurt me all people first focus on is the emotional part and think it is a mental disorder. It seems that soon as you say brain injury people think omg she or he cannot control emotions and some believe us TBI survivors to be dangerous and that hurts me so bad.

In 2014 I was in a car accident where I suffered a blow to the head knocked that knocked me to an unconscious state where I endured multiple seizures. I was out for about an hour and was given the okay to go home from the hospital the next day.

In the fall of 2018, I wrecked a motor bike (going about 60 mph) and hit the road head first with no helmet. Again, I was knocked unconscious where I endured multiple seizures and was out for about an hour. And peed my pants. After several tests at the hospital, I was released. No brain bleeds, skull fractures, or anything to speak of. Except a swollen head and a blurry memory.

I recovered well from this considering the circumstances, but I can't help but feel a little different than before. There's a lot I could say here, but I pretty much just feel like my thought process is very altered. I do small things without thinking like top off my coffee with water or unplug an appliance for no reason. I recognize it shortly after and become frustrated. I also feel that I struggle more with finding words to start sentences and trip over my words often. It's even become almost a joke among my friends. My patience and social butterfly capabilities also seem stunted, but I wonder if this is the injury or just me thinking too much about it. I do feel over stimulated often. Seems like I need more time to process simple sentences more than others. I also get frustrated easily.

I haven't talked to anyone about these issues because they are hard for even me to understand and my injuries have been dismissed. But I also don't want to dwell on them because it is what it is. From what I've read, it seems like we are mostly on our own in understanding ourselves and how our injuries have impacted us. But if we're still living, I think the best we can do is embrace our new selves and thrive on it. I won't pay a lump sum for someone to tell me the things I already know.

I have never written on any forum before. I hope someone finds value in this. I hope we can connect.

My wife suffered severe TBI as a result of a hit and run when she was 17 years old. She is now 43 years old. She was in a coma for six weeks. She has all the symptoms that you have shown in your article and I have handled everything the wrong way and the article above has put me straight. Now I can see my wife is not alone (neither are you) in her behaviours and responses and reactions to things. I have been a complete utter idiot BUT I will understand more with what has been written, here. Like you, my wife is actually very intelligent and I see signs of that virtually every day. Thank you for your input

Dear Rachel, 4/25/19; if you haven't found a support group for brain injury survivors, I would encourage you to inquire through the Brain Injury Assoc. in your state. They can be very helpful, a place where people "get it'' and letting you know you are not alone.
Never give up, things can get much better.
Barbara

This is a well done article! I was actually in tears reading it. I have a VERY large family who often love to have family gatherings. I often do not attend any of them. I am a RUPTURED BRAIN ANEURYSM SURVIVOR! While my family knows that I have changed they often make me feel bad for not attending the events. Reading and sharing this article really helps me understand that what I deal with daily is a real situation and I am not alone! Thank you so much for putting this in writing! #BAS2014

THANK YOU! I realize now that many people in my life just do NOT have the time or patience to deal with me now and this is NOT my fault and this is NOT on me. I need to cut those people OUT of my life and MOVE ON to healing.

I NEEDED to read this and I am handing it out to EVERYONE i know and to everyone I meet. And i am explaining to them that I am NOT mentally ill and i do NOT need to be punished or chastised, which is how I have been treated. I am SICK and I deserve COMPASSION. Thank you thank you thank you

my grandad is in a coma currently in hospital after a fall 9 days ago. He has swelling in the brain. we are waiting for it to heal so that he will come out of his coma. Doctors are very negative but i feel he will make it through. anyone else been in a similar situation?

There is hope! I was hit by a car on my road bike and in a coma for ~7 days. The doctors told my wife to expect the worse, e.g., that I may not remember who she or my kids were, may not be able to speak, etc. God willing, I woke up on the ~7th day and, while I couldn't physically hold anything with my hands, I was able to remember everyone and eventually speak. I am a walking miracle and hopefully your grandpa will be too!

In my family's experience doctors tend to give you the worst case scenario. Stay positive together for your grandpa. It will be a long road and he will need you all. My sister was in a comma for 2 weeks with severe swelling and had to work hard to learn all over again and 4 years later is still dealing with her new reality but doing just great. Good luck to you and your family. We will say a prayer for your grandpa.

I've been through a lot of this. I couldn't convince anyone, including my doctor, that I was hurt for nearly nine months so was slow to heal and deal with some of these issues. Thank you, I thought I was the only one having issues!

Almost 4 years ago, I was in a car accident that caused severe TBI. That is brain injury. It was tough for me at first but now I don’t have any of those issues it causes. My memory now is great. I am really organized with most things in my life. Examples would be of my car. I keep up on all maintenance needed and keep it clean. My house, my bedroom, I always keep both of them clean and organized. I don’t feel confused about things. If I am doing something, I stay focused on it. I’m a type 1 diabetic and my A1C is perfect. From a blood test, cholesterol is good, blood pressure perfect, no problems at all with my kidneys. I don’t feel that depressed feeling. The reason why is I battle through all of this to achieve great health and life.

I was in a near fatal car accident when I was 17. Was ejected from the vehicle, and sustained multiple injuries. Punctured both lungs, broke 6 ribs, had my left ear cut off, torn acl in right knee, and parietal skull fracture with large amounts of brain swelling. When I awoke I didn't remember a thing. Not even who I was. For months following, I suffered several memory lapses, severe headaches, and nausea. I recieved a diagnosis known as dyspraxia. Basically my brain runs like a 96 escort. Itll get the job done, but its gonna chug and putt the whole way there. The accident was when I was 17. Now I'm 30. I still have issues with mood swings, short term memory loss, brain fatigue, being easily overwhelmed and over anxious. Planning is a big struggle of mine as well as originality. It's especially hard for me to think on my feet if you will. I need constant cues of reference. If you asked me what my favorite movie was, I would stare blankly. I would need you to give me a list and I could tell you which I favored more. Often times I research into arrested development, thinking perhaps it fit my circumstance. At times I feel stuck at 17 with all the responsibilities of being 30.

Sometimes I feel stuck at 12 and I am 40. That was my TBI. I can relate to what you are saying.
At 39 I sustained a mTBI from a car accident and I have been reliving a lot of symptoms from my teen years that I didn't realize were from the TBI. I did not have the best follow up care at 12.

You are not alone I feel like a teenager or a toddler sometimes on my best days....TBIs do that to you. Sadly, so many of us do Not get the care we need. Keep going forward you are a warrior, a survivor and a champion...remember that

I am 76, and was in a car accident at the age of 23 before there were CT scans or MRI's. I was unconscious three days, out of work six weeks, and went back to my same job in a laboratory. I had a skull fracture, concussions in the front, broke many teeth and survived with no surgery. The attending physician told me when I was conscious that I was lucky because I had my "block knocked off", meaning my skull was off my spine if I understood him correctly. I'm certainly not clear on what I felt like during that recovery time, but remember getting a great deal of sleep every day for six weeks. It wasn't until this year when I had a CT and MRI in search of a diagnosis of what a neurologist said were two possible seizure episodes. He was shocked at what my brain looked like as was the doctor where I was hospitalized. My frontal lobes locked destroyed. I had lost my sense of smell completely for seven years, and now it comes and goes with mostly minimal ability to smell things. But I can't say I understand what else it meant because my IQ was "very superior" and my memory was tested to be 2.5 standard deviations above the mean around age 60 when I was worried about my mind losing its abilities to comprehend. The worried well. I don't recall symptoms, but that may be a memory problem that was happening at the time,...just a mystery to me. The neurologist told me this year that I was extremely lucky that I have had no symptoms up until now. The CT scared me. My brain is acting differently now. I'm beginning to feel things going differently. It is hard to put into words. So I'm waiting. I guess I will just hit the veggies and fruits and legumes hoping for the best. The prognosis for people with TBI is one that is too often a future with dementia. But being 76 means I did well. Shouldn't complain about that.

Yours is an amazing story, Carol. It seems your life following the TBI was truly miraculous. I hear that things are changing in your brain function now. That must be scary regardless of how fortunate you have been. Please know that my thoughts and prayers are with you.

Yes I agree and it's basic respect for others as I was taught but it is ignored and I often wonder how blind or vision impaired people learn to accommodate and tedious detailed repetitive steps that is tiresome to me as TBI PATIENT and domestic violence survivor that is not supported, represented, or advocated as worthy individual that has learned more skills and adapted to deal with matters positively and with success and regain quality of life as individuals that is equally valued in community and roles of intelligence is recognized and prior credentials and education are basic qualifications required to be professional and expert qualified for job and classified as professional status.

However in area I live and have no positive outcome or supportive GROUps that recognize TBI patients as equal persons who are worthy or needing assistance but it's rudeness of the south as its current situation and courtesy and basic respect if others are vanishing completely as general behavior and it's simple to nor move others things and inside their environment and chairs and tables are not kept where they were placed and it's cruel and it should be labeled as it is. But if I was to move entire home around that wasn't mine it be acknowledged as awful behavior of my person and as my disability made it unpleasant experience and I not got anything except more issues and tasks but I know they get moved by others constantly also. Thanks for your attention and please be aware of respecting and leaving stuff alone that isn't yours or an if your business.

I suffered a large right-hemisphere subdural hematoma as the result of an assault. Fortunately, I was in Trauma ICU when a series of seizures landed, and a neurosurgeon was on-site. A prompt craniotomy probably saved my life. If I was elsewhere at the time, the outcome might've been really bleak.

It's been six weeks since the injury, and I notice changes that frustrate me but others either shrug off as me having an "off day" or might be too polite to point out. For example, my short-term memory has always been hit-or-miss but now it's worse than ever and impedes basic daily functioning. I also have language difficulty that I didn't have before. I've trouble gathering thoughts and communicating in a linear, cohesive fashion.

I hope with time and practice this will improve. Another oddity is a pervasive knocking sound, it's like a tiny carpenter inside my skull busy building furniture. It does coordinate with my pulse, and I mostly hear it while lying down. I wonder why this happens and if it will stop.

I appreciate this article because I can share it with people and it will be able to explain some of the things I'm experiencing.

Let me start off by saying that these are very helpful to family & friends overall in understanding me and TBI .

My story is back in 2014 I went in for a DR visit for an upcoming neck surgery to fix a C5/6 herniated disc . A better MRI was needed before the operation could be performed. In having the better MRI done , a golf ball size brain tumor (on the lower back of my head and upper spinal chord) was discovered. Fortunately the tumor was non-cancerous but appeared to be there awhile. In removing 80% of it due to it being attached to my spinal chord and wrapped around my jugular vein, (per the Neurosurgeon) the other 20% was determined to be too dangerous to remove and left alone. After the surgery was complete( which took shy of 13 hours) I was left with my Cranial Nerves 7- 12 either destroyed and/or damaged. I lost the ability to walk , stand , swallow/eat/drink (A Peg tube was put in for all intake and nourishment purposes), hear (right side only) write (again right side), speak clearly and without difficulty. A weight was also put in my (right side) eyelid to help it close shut, being it no longer shut all the way on its own. A lot has happened since 2014 to now , many surgeries and procedures to list have happened. I now can only walk/stand with help and at a very short distance when I do walk. I can swallow just a little bit due to a special surgery performed at UCLA. I have lost complete sight on my right eye, but have gained about 20% of my hearing back. Everyday is a struggle of some sort , with old & new ailments ,but as stated above , some days are better than others .I take it one day at a time but have the love of family & friends......For that I am thankful !

I am using CBD from Fat Pig Society in Ft. Collins CO for pain. I use 1/4 teaspoon three times a day and it has helped me become "normal" with no pain for weeks at a time. The guy who hit me never looked up from his phone. My life changed in an instant and his went on. I had tried CBD from other places and it made the headaches worse.

Thank you for defining this for my family in this simple format. I'm forwarding it to my daughter and friends who want to support me but still think the old Val is coming back.

Thank you for articulating these symptoms so clearly. I suffer from the effects of a closed traumatic brain injury as well. I endorse everything you wrote however I would like to add one more fallout symptom. I am measurably more frustrated with even the littlest issue, much more so than before my injury.
Thank you again for this well written piece.

Thank you so much for your input. In addition to the above article, this is exactly what now happens to me now since my closed head injury and skull fracture 6 years ago. This is a great article that describes how, what and why to everyone and provides so much truth to what is really happening to a brain injury survivor. Take care, stay safe and God bless to everyone!

This program is made possible in part by a grant from the Bob Woodruff Foundation, which is dedicated to ensuring that impacted post-9/11 veterans, service members, and their families are thriving long after they return home.

BrainLine is a national service of WETA-TV, the flagship PBS station in Washington, D.C.